Hannah Friedman: “Flailing with Dignity: How the Medical Anthropological Lens Allowed Me to Interpret and Cope with My Grandmother’s Death”

In October my grandmother died. I’m still not sure what to say Meme died from – she had early onset Alzheimer’s, but her technical cause of death was “failure to thrive.”

Meme was my mother’s mother. My mom spent the last few years of Meme’s life making frequent trips to upstate New York, where Meme lived in a retirement community not far from her home. Last summer, it became clear that it was best for her to move down to an elderly care community in Durham, North Carolina, where my parents live. In Meme’s final weeks, she moved in with my parents. There, my mother, father, and sister Jess took care of her. My mother has a background in community health and social work, my father is a primary care physician, and Jess is in medical school at Duke. Jess’ twin, Kait, and I visited from Philadelphia and New York City, respectively.

It is difficult for me to try to point out exclusive instances when my coursework in medical anthropology affected my experience of Meme’s death, because medical anthropology was the lens through which I experienced absolutely everything. Without this lens, I imagine I would have seen the process of Meme’s death as generally predetermined: this is just the way death happens. Yet medical anthropology taught me to look at each health narrative as distinctly subjective, complex, and unique. Readings and class discussions on dignity, the language of disease, patient agency, moral economies of health, and the politics of end-of-life care suddenly became very real, and even more complicated than I had imagined. Every tiny decision and interaction was a critical opportunity to explore how we – my particular family, in this particular time and place and culture, with this particular relationship to healthcare – attempted to make sense of and make peace with Meme’s illness. In this essay, I examine how medical anthropology as an intellectual tool for engaging with my grandmother’s death profoundly enriched my emotional and spiritual experience as a granddaughter, daughter, and sister.

In every way I can imagine, Meme led an extremely active life. Her days were defined by movement: organizing church events, volunteering at her local library and Huguenot historical society, gardening, running countless errands, and visiting friends and family and neighbors (and calling friends and family and neighbors, and writing to friends and family and neighbors, and cutting out newspaper clippings for friends and family and neighbors…). She was overfull with energy and love, all the time.

I remember her matching lavender sweatshirt and sweatpants that she often wore on daily power walks. She didn’t smoke or drink, took her horse pill vitamins and bone density medicine, and later in life regularly attended fitness classes at her retirement community. I remember standing in her shower as a little girl, staring (not without some confusion) at instructions hanging over the spigot that showed how to self-conduct breast exams. She drank her coffee black, and only on special occasions would she add a spoonful of sugar. On her eighty-fifth birthday, she went on a day-long hike with her nephew.

Meme was creative at describing things or concepts she could no longer remember, and sometimes conversations felt a bit like the game Taboo. In one such discussion with my sister Jess, Meme tried to recall the word, “scale.”

“You know,” she said. “It’s that little white box that tells you how fat you are.”

Meme was also absolutely brilliant and intellectually insatiable. She graduated high school at sixteen, taught elementary and middle school for forty years, consistently attended continuing education classes at the nearby community college, and was a voracious reader with a nearly comical capacity for recalling family stories and obscure facts. Meme was extremely engaged in my and my sisters’ lives, and her favorite gifts to us were books, through which she celebrated my love for history. About a year before Meme died, I traveled to Granada, Spain. She recommended I read “Ornament of the World,” a nonfiction book about ancient Islamic and Christian history in southern Spain that she’d read just a few years earlier. It was too dense for me to finish.

Memory loss is inexplicably traumatizing for anyone. Our belief that personhood is centered in the brain’s capacity to retain and remember makes this loss more isolating than it needs to be. But I must note that for Meme, the loss of her memory was uniquely personal, like a painter losing her vision, or a sprinter losing his legs: it is by no means impossible to survive or to love without the central qualities that define us as individuals, but it is certainly difficult. Meme’s exceptional memory was fundamental to how she related to people and to the world. The cruel irony of her memory loss was devastating, most of all to her.

Meme and my mother had many long conversations dissecting the series of events leading to her official Alzheimer’s diagnosis.

“I did everything right,” Meme once said. “Why did this happen to me?”

These conversations revealed to me the persistence and pervasiveness of certain dominant medical narratives. All American women know that a scale is an instrument for measuring a person’s weight, and all American women know that a scale is actually an instrument for telling you how fat you are.

All Americans know that preventive medicine is a well-reasoned and important approach for maintaining one’s health, and all Americans also know that if you get sick, you probably could and should have done more to prevent it. Meme’s question to my mother pushed me to acknowledge a complication in the very good case for preventive medicine: statistically, people like Meme live longer and healthier lives. The problem, of course, is that this emphasis on “what you can do to avoid x” naturally leads to, in the case of x, “what didn’t you do? How weren’t you good? How can we write off your story as an exception to the rule?”

How can we take on our own powerlessness when it comes to our health and disease, using the same framework that tells us we are responsible for our health? How can we encourage healthful behavior while acknowledging that in the end, what we do might not matter at all?

Of course, Mom’s answer to Meme’s question was, “I don’t know.” When I think about Meme’s final months, I think most about our loss of control over almost anything. I see each family member suspended in a dark, directionless void. I often felt like I was floating in space, detached from anything.

As Meme’s memory deteriorated further and further, and her health became increasingly distressing for my family, I would often wake crying from a nightmare where I watched Meme standing alone in a dark forest, turning around in circles over and over and over. In the dream, I never called out or reached to her to guide her in a certain direction. The agony of the dream wasn’t my inability to guide her, because I didn’t know where she was, either. I didn’t know where she ought to go. The agony of the dream was my inability to stand next to her; it was being mere feet away and yet having no way of simply being with her in such vast and overwhelming isolation.

Surrounded as she was by my mother and father and Jess, the hardest part of watching Meme die was how alone I imagined she felt.

I also feel profoundly alone in my own grief. I feel the dull ache of missing her, just wanting for her, but not finding much comfort in the thought of talking about it with my mom or sisters or best friend, because it is not a problem to be solved or an anxiety to be sorted out and reframed. It is simply loss, absolute and irrevocable and real. There is not much else to say. I don’t want to talk about whether they miss her too (yes), or whether I regret the ways I didn’t love her (of course), or how it felt to rub lotion on her legs (dry and holy), or even to talk about who Meme was (a volunteer, a servant, a grandmother, mine, light, dense, unfaltering, everything). None of this will help. I won’t leave a conversation feeling better, because the grief’s source is her absence. She is gone. The pain lingers.

Grief is unlike anything I have ever known. As a member of a generation raised on self-help books and a charge to always do more to fix and improve the world, I have found it strangely gratifying to find myself definitively powerless. You can’t fix something that isn’t there.

***

When I came home for a visit in early October, I realized that Meme was terminally ill. I stood in the kitchen with my dad, trying to hold myself together. He told me a story from when he was much younger, when an older doctor advised my father about their role in a patient’s impending death.

“Either way,” The doctor said, “The plane is landing. The landing might be rocky, or it might be smooth, but it’s landing.”

“So, the plane is landing.” My dad said to me. His voice broke. “All we can do is try to make her as comfortable as possible…” I can’t remember the rest because I was crying too hard.

Dad’s metaphor made me think immediately of past medical anthropology courses, and discussions about efforts to “maintain a patient’s dignity.” Normal standards for what is comfortable and respectable don’t fit in the worlds of terminal illness. The process of assessing a dying person’s dignity, I believe, is often misplaced on the patient. What does her death look like? How does her illness play out on a daily, hourly basis? How can we pretend that she isn’t sick? How can we help her feed herself even though she can’t, help her bathe herself even though she can’t, pretend she can remember things she can’t remember anymore?

Yet dignity, shame, pride, and respect have more to do with everyone but the person who is sick. All of these concepts are, of course, subjective notions based on how we judge each other. There may be some sense of objective self-respect, but most of my pride and dignity is based on how I perceive my ability to adhere to societal standards and earn others’ respect. In the context of disease, this begs the question, “What social norms are we as caregivers holding onto here that just don’t fit?”

In other words, how can we affirm Meme’s dignity by redefining what dignity means? How can we make her as comfortable as possible (physically and emotionally) by acknowledging that her discomfort is valid and real? If we had actively denied the difficult and uncomfortable realities of Meme’s illness or simply chosen to say nothing at all, we would have further distanced ourselves from her and her humanity by denying an inherent human reaction to dying: this is unpleasant and confusing and painful. This is unpleasant and confusing and painful. By owning the discomfort, I felt we were able to be present with Meme, and could better walk alongside her to her death.

In the final weeks before Meme’s death, she stopped eating almost anything. Too weak to walk on her own, she was forced to rely on whoever was available to help support or carry her when she needed to move somewhere. I remember one particular instance when we’d moved Meme from her bed to a chair in the living room. She was exhausted and agitated by the move, breathless and clearly distraught. My mom went and sat next to her.

“This must be really difficult,” she said. Meme nodded, still breathing heavily. “I imagine it’s embarrassing and hard for you to have us helping you so much, because you’re used to being so independent.” Meme nodded again. “I’m sorry, Mom.”

This was an approach that I noticed all of us took in caring for Meme, and this was my mom’s eventual answer to Meme’s question, “Why did this happen to me?” Her answer – our answer – was that we are all powerless and none of this makes sense, and the only thing we can do is sit with you and acknowledge that this is unpleasant and confusing and painful. We are all doing our best, because the plane is landing, but this is unpleasant and confusing and painful.

I believe that maintaining Meme’s dignity meant allowing for most practical things to change at the expense of a few intangible things remaining the same. We were all lost, we were all powerless, but we were all sitting in the living room, in the plane, together and alone, flailing in our own ways and in our own powerlessness, next to each other.

This is the only way to sit closer in our respective losses. I don’t know what sort of nightmares Meme had about being lost in the woods. I don’t know what it felt like for my mother to imagine Meme’s death as a landing plane. I don’t know what Jess first remembered when she awoke after Meme died. All I can do is try to float as close as possible to them.

My parents and Jess frequently noted their appreciation for Meme’s willingness to be cared for as she died. As frustrating as it must have been for her, she accepted their help – walking and eating and changing clothes and remembering – with sincere gratitude. This willingness, from Meme and the rest of us, to cede control and be present with each other, was fundamental to my personal vision of what it meant to maintain Meme’s dignity. I would be lying if I said I thought Meme felt she died the way she had envisioned, but I hope that, given the circumstances, she felt we had all done okay.

This reminds me of a middle school science lesson where we learned the futility of jumping just before a crashing elevator hits the ground. You’re going to hit the ground just as hard. The universe plays by certain rules that we can’t change. We can cling to some illusory world where we can change gravity, or we can come to terms with our own powerlessness, recognize that we are all falling and floating and scared, and come sit with each other, because no matter what, the plane is landing.

**

Without meaning to, I take some sort of twisted comfort in building my life around the same stories that Meme did, quotidian or mythical as they may be. The stories anchor me to her, or at least let me float closer to her. In my own ways, I cling to the same narratives about health and being good (however flawed), and I latch onto the family stories she relayed to us (to say nothing of the volumes of unknown stories lost when she died).

On long afternoons I often unconsciously wander towards Sheriff Street on the Lower East Side, the street on which my great-great-grandmother first lived. These walks certainly don’t fix my grief. They don’t fill the void, or cure this sense of loss, which is incurable. I wander towards Sheriff Street to remind myself that I did listen to Meme’s family histories. I do it because I imagine she wandered there too, not so long ago, so we are closer together in our powerlessness when I’m down there. Mental notes that I’ve been writing to her begin to unravel: “Hi Meme. I miss you. I’m sorry for everything. I bought a new book on the history of Greenwich Village and wish we could talk about it. I drink my coffee black, too, and think of you when I do. I bought a new little white box that tells me how fat I am.”

Year of graduation: 2011

Profession/employment/ post-graduate study: Community Liaison, Office of the Manhattan Borough President

Most important “on the field” lesson: People are only as crazy as the systems in which they are required to operate.

Who and what inspires you: family, my best friends, teachers at Carolina Friends School, the weeping willow tree on my block, La Sagrada Familia in Barcelona